ME/CFS
No benefitIll for 12 years
ME/CFS for 12 years, no benefit from high-dose thiamine
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 12 years
- Last post
- Feb 2023
In their words
- Condition: ME/CFS
I just wanted some respite from this illness but made myself more ill
In context ↗ - Now: No benefit
I just wanted some respite from this illness but made myself more ill
In context ↗
Read from 7 of their posts and comments; links to the 4 this page draws on
Summary
Ill with ME/CFS for 12 years, they tried high-dose thiamine (Thiamega) in February 2023, raising from 1/8 to 1/2 capsule over five days. After six days they stopped with escalating head and jaw pain that became severe right-sided facial pain attacks keeping them awake at night; a doctor suspected trigeminal neuralgia and prescribed codeine. They had not recovered at their last post and planned to retry benfotiamine alone, avoiding TTFD and sulbutiamine.
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What they tried
Also tried
Their words about each treatment
- Thiamega · Much worse
High dose vitamin B1 caused trigeminal neuralgia symptoms
In context ↗ - B complex · Not said
I took it with recommended cofactors like B complex, multivitamin, magnesium, glutathione liposomal, molybdenum, potassium and NAC.
In context ↗ - codeine · Helped
the doctor prescribed codeine which keeps the pain under control
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| onset | ME/CFS onsetwhen I've put up with it for 12 years alreadyIn context ↗ | Not stated |
| February 2023 | severe head and jaw pain after high-dose thiamineI developed highly unpleasant head and jaw painsIn context ↗ | Not stated |
| 2023-02-26 | still in severe facial pain after stopping thiamineI just wanted some respite from this illness but made myself more illIn context ↗ | Moderate |
Adverse events
- Thiamine / benfotiamine“for the first few days I just had a slight increase in fatigue, headaches and random muscle cramps but nothing unbearable” In context ↗ Made symptoms worse
- Thiamine / benfotiamine“the pain escalated to severe pain attacks on the right side of my face that became so bad that they kept me up all night unable to sleep a wink in agony” In context ↗ Nerve pain
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
severe pain attacks on the right side of my face
In context ↗ - Headaches & migraine
headaches and jaw pain that increased gradually by the day
In context ↗ - Sleep problems
kept me up all night unable to sleep a wink in agony
In context ↗ - Mast cell (MCAS) & allergies
I did once have what felt like a slight allergic reaction to canned anchovies
In context ↗